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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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@aoise Hi, so sorry you’ve joined the club. I will probably have to start treatment soon, too, and like you I dread it. To the positive, I did make it 2 years without having to do the big 3. Prayers for us all.
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1 Reaction@onana Hi there, thanks for your post re: when to treat.
@onana if you were working, are you still able to work full time? Did you start with IV antibiotics?
@aoise, Hi there. You really do need a well versed specialist to handle this disease. Read all that you can here on our past posts and check out the discussion board on our group's home page. There is tons of info.
@america Rita, you are in my thoughts. Wishing you luck on your sodium level test next week. Hugs!
@aoise welcome to this site with all these wonderful women. I'm not on here very much but I read everything. I got diagnosed over two years and was totally asymptomatic and the bronchiectasis was found accidentally when I had a breast MRI (I have breast cancer in my family) by a very good radiologist. Some docs probably might not have treated me because I wasn't sick but when I followed up with CT scan my local pulmonologist said my lungs looked bad and started me on the big 3. Two years later I'm glad I went ahead and did it only because my lungs would have probably even gotten worse. I had no problems with the big three. I did get tinnitus in my ears near the end but that was it. And I have my own business and still work six days a week still because I have to and decided not to let this disease get the best of me. I do get tired but I was tired before so I never know if it's the disease or not. I did get the bad flu this past February with a horrible cough and the cough has "set" in...I've been coughing for nine months now and sound like a sick donkey when I cough. So now I actually feel like I have lung disease with the coughing and phlegm. But I'm going to a new doctor who specializes in bronchiectasis at the Medical University in Charleston, SC so I'm feeling good about that. My last sputum test showed no MAC but that bug can pop back up at anytime. @windwalker is our fearless leader and mentor of the group but there are so many others that have so much good advice...@boomerexpert @tdrell @heathert @ling (i'm not sure if I've written ling's name right) and more. I have learned so much from all of them and others.. Hang in there. Nan in SC
Thank you to everyone who has kindly replied and made me feel welcome and not quite so on my own with this condition. I really appreciate it, especially the encouragement to consider taking the medication. I am seeing a specialist at my local hospital but I know my GP will be able to talk over what the hospital has communicated to him. Thanks everyone and best wishes.
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2 Reactions@brigby To answer your questions, I didn't start with IV antibiotics. By the time my condition worsened (spring 2017, after living with bronchiectasis diagnosis since 1997 and NTM diagnosis since 2008) I was retired from full-time work. I still work part-time and I've been working around the Monday, Wednesday, Friday doses of the 3 antibiotics. On those days I like to stay home in the afternoons to be close to my own bathroom and be able to rest if I need to rest. But I have to say those days are getting easier as time goes on.
@onana Super helpful info thank you so much, and may Godnbless you many more good days!
Hi, My name is Sandy and I am new to the group. My Mom has MAC and has been on the big 3 for 2 months. She has lost her ability to see color in one eye, so they discontinued the ethambutol. Now, they want to add amikacin but we are not sure about this. I've been reading that some people lose their voice,while on this medicine .Also, vertigo is a possible side effect. My mom has a history with vertigo already. I was just wondering if anyone out there who has taken (inhaled) amikacin (Arikace) could give us the benefit of their experience. Was it worth it from your perspective?